US To Build $300 Million Database To Fuel Alzheimer's Research (reuters.com) 22
The U.S. National Institute on Aging (NIA) is funding a 6-year, up to $300 million project to build a massive Alzheimer's research database that can track the health of Americans for decades and enable researchers to gain new insights on the brain-wasting disease. Reuters reports: The NIA, part of the government's National Institutes of Health (NIH), aims to build a data platform capable of housing long-term health information on 70% to 90% of the U.S. population, officials told Reuters of the grant, which had not been previously reported. The platform will draw on data from medical records, insurance claims, pharmacies, mobile devices, sensors and various government agencies, they said.
Tracking patients before and after they develop Alzheimer's symptoms is seen as integral to making advances against the disease, which can start some 20 years before memory issues develop. The database could help identify healthy people at risk for Alzheimer's, which affects about 6 million Americans, for future drug trials. It also aims to address chronic underrepresentation of people of color and different ethnicities in Alzheimer's clinical trials and could help increase enrollment from outside of urban academic medical centers.
Once built, the platform could also track patients after they receive treatments such as Leqembi, which won accelerated U.S. approval in January, and is widely expected to receive traditional FDA approval by July 6. The U.S. Medicare health plan for older adults will likely require such tracking in a registry as a condition of reimbursement for Leqembi. [T]he data platform could also help researchers working in other disease areas understand which patients are most at risk and the impact of medications. The grant, which was posted on March 13, has been years in the making. The funding announcement sets its earliest start date at April 2024, with a goal to establish an Alzheimer's registry 21 months later.
Tracking patients before and after they develop Alzheimer's symptoms is seen as integral to making advances against the disease, which can start some 20 years before memory issues develop. The database could help identify healthy people at risk for Alzheimer's, which affects about 6 million Americans, for future drug trials. It also aims to address chronic underrepresentation of people of color and different ethnicities in Alzheimer's clinical trials and could help increase enrollment from outside of urban academic medical centers.
Once built, the platform could also track patients after they receive treatments such as Leqembi, which won accelerated U.S. approval in January, and is widely expected to receive traditional FDA approval by July 6. The U.S. Medicare health plan for older adults will likely require such tracking in a registry as a condition of reimbursement for Leqembi. [T]he data platform could also help researchers working in other disease areas understand which patients are most at risk and the impact of medications. The grant, which was posted on March 13, has been years in the making. The funding announcement sets its earliest start date at April 2024, with a goal to establish an Alzheimer's registry 21 months later.
And $280 million goes to Big Tech for the database (Score:3, Insightful)
and the remaining $20 million will be used for the actual research.
It's a very special database you know.
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The entire $300M is for the database.
The amount we spend on the actual research is far more than that. Just the NIH spends $3.5B on dementia research.
We should be spending far more. Dementia costs the American economy about $200B annually in medical costs, lost income, and the lost income of family members who leave the workforce to care for their relatives. So a cure or even treatments to delay onset would be a huge benefit to the economy.
Re:And $280 million goes to Big Tech for the datab (Score:5, Informative)
That $200B figure seems to be a massive underestimation to me. It counts only direct monetary costs, while failing to account for people who do hours of unpaid work every day to change the grandma's diaper, argue with her that no she's not getting out to work or "home", etc. Such caretakers can't have a "vacation" from that care, are stuck for a decade while degrading mentally and physically themselves, instead of enjoying life they quickly become depressed and demented themselves. At least here (Poland) it's considered a major transgression to send your elders to a retirement home; as a result I see about 1-in-4 if not more of family/acquaintances getting saddled down this way.
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The Feds always underestimate and then go back to Congress for more funds later. They then can use the "we're so far along that abandoning would cost more" budgetary argument.
They should just use a Data Lake in the cloud, spending the money on the actual research rather than infrastructure and support.
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They should just use a Data Lake in the cloud, spending the money on the actual research rather than infrastructure and support.
Because if its in the cloud it's free, right?
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License and support costs aside, they can scale it as they need to rather than build out a static deployment footprint that will most likely be underutilized for years. Then when they start fully utilizing it, they'll need to do a refresh.
Not to mention... (Score:3)
Dementia costs...
Not to mention the fact that it scares the shit out of me. My father died of Alzheimer's. So did my maternal grandmother. My mother has unspecified dementia now. As someone with a high IQ, the one thing that scares me is losing my mind slowly. The cost isn't just after the disease hits. The cost is also wondering every time I forget where I parked, or put down my cell phone somewhere dumb, whether or not it's starting.
So yes, tracking people is a great idea. And starting people on amyloid-breaking dr
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>"And starting people on amyloid-breaking drugs early, before they have symptoms, is one thing that might come from this. "
Do we even know that amyloid/plaques are the cause or just a symptom/byproduct? I am just starting to research this stuff, and really, it seems pretty unclear.
Just read the "breakthrough" on Leqembi, which is shown as effective against the amyloid (at HUGE cost) and yet no mention at all in how effective it is at actually halting or improving dementia.
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IBM (Score:3)
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Keep IBM away from this. They've proven to be no longer competent at these kinds of things.
Is there anything they remain competent at? Even keeping customers hostage isn't going well -- the Centos fiasco ended in a massive exodus from the Red Hat ecosystem instead of bringing more money to Red Hat/IBM. And even the Nazgûl are not what they used to be.
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Who do you propose to do this?
Oracle, IBM, Google, Meta, Amazon, Microsoft, Apple?
Some kid who know how to use PostgreSQL.
Nah, lets just have the Admin office do it. They will put it on a single non-backed up Access file and we will lookup data via a public windows share.
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Who do you propose to do this?
Oracle, IBM,...
Someone who can read, for a start.
Already done? (Score:3)
Removing the toxins/infections that are causing the linings' leakiness and encouraging repair through diet, exercise and de-stressing was the main idea, I thought. Then again, that's not something a doctor can/will easily prescribe, and is certainly not in profitable-pill form.
Upside (Score:2)
The upside to this is my /. participation materially increases when CVS is unable to fill my Adderall prescription. 3
Let's hope that ... (Score:2)
...nobody forgets the password.